One Year After Rhizotomy — Scope | Disability forum

One Year After Rhizotomy

Guest
Guest Member Posts: 1,968
edited October 2014 in Disability rights and campaigning
Wow, it has been one year since Aaryan had undergone SDR. So much has changed since then. He can now walks unaided in the house and in the garden. Although his gait is not normal, he walks with a bit of limp on the left side, but hey this is walking.

We struggled with the amount of physiotherapy required after the surgery. He needed 5 times a week PT, which NSH has not been able to provide. We managed to it ourselves at home as much as we could. I bought a treadmill too. And then we took Aaryan to CPPC at Flitwick for three weeks which has made a big difference. The progress has been slow but steady, every day we noticed things changing. I think it was the best thing we did for him.

Before the surgery Aaryan was not independently walking at all. He was ok with kaye walker and it was said he will need to use wheelchair for most of his life. That is when we decided that something else has to be done and a friend of mine told me about rhizotomy surgery.

Just wanted to share with you...XX

Aaryan's dad
· Share on FacebookShare on Twitter

Comments

  • Guest
    Guest Member Posts: 1,968
    Wow, it has been one year since Aaryan had undergone SDR. So much has changed since then. He can now walks unaided in the house and in the garden. Although his gait is not normal, he walks with a bit of limp on the left side, but hey this is walking.

    We struggled with the amount of physiotherapy required after the surgery. He needed 5 times a week PT, which NSH has not been able to provide. We managed to it ourselves at home as much as we could. I bought a treadmill too. And then we took Aaryan to CPPC at Flitwick for three weeks which has made a big difference. The progress has been slow but steady, every day we noticed things changing. I think it was the best thing we did for him.

    Before the surgery Aaryan was not independently walking at all. He was ok with kaye walker and it was said he will need to use wheelchair for most of his life. That is when we decided that something else has to be done and a friend of mine told me about rhizotomy surgery.

    Just wanted to share with you...XX

    Aaryan's dad
    · Share on FacebookShare on Twitter
  • mafala
    mafala Member Posts: 71 Listener
    Hi Aaryan's dad,

    That's such good news that the op worked out well. I seem to recall that you went to the US to do it?. I've just booked an assessment with CPPC in Flitwick. It looks really good. I think they are on to something in that centre. Strengthening is the way forward with CP. Can I just ask if the treadmill you got was specially adapted for children?.
    · Share on FacebookShare on Twitter
  • Guest
    Guest Member Posts: 1,968
    Yes we went to US for the operation. No its just a normal adult motorised treadmill (
    · Share on FacebookShare on Twitter
  • ionarowan
    ionarowan Member Posts: 4
    Well done to you all for all the hard work. I'm pleased that it is all paying off

    How old is Aaryan? Rhizotomy is something I've read about before and find it fasinating but how did you go about getting it done in the US?
    · Share on FacebookShare on Twitter
  • Guest
    Guest Member Posts: 1,968
    Thanks ionarowan!
    Aaryan will be 4.5 years next month. My previous complany sent me to US on my request on a project, so it was kind of relatively easy for me. However after coming back to UK, it became very tough. Given another chance I probably would not have come back, they were so good in US.
    It is a hard work, especially after the surgery when Aaryan required 5 times a week PT. But somehow managed it till now and results are very encouraging. Without the Physio, the surgery would do nothing. So, we had no other choice but do it at home or we could have been back to where we started from.
    · Share on FacebookShare on Twitter

Brightness

Categories